Sunday, 23 March 2014

Diary Luke Aemia Week 9

Sun 23rd March

So today was a pretty run of the mill day, medically speaking.
The potassium wasn't given last night so the slightly low potassium result may have been false.
Jacinta's weight was back to around her base weight, so the Dr stopped all the diuretics. We just have to have normal potassium to be back to our once daily antifungal and thrice weekly antibiotic orally.
We still have twice daily antibiotics intravenously until the counts go up.
The weekend Dr thinks that there will need to be another platelets transfusion in a couple of days - but that's only if they don't go up on their own, and he doesn't know our Jacinta!
(Or am I clinging to tiny strands of hope that we might still make it out in time to wave our family off to the UK on Friday?)
We got to sleep in again this morning - and it slipped my mind to be dressed for the appointed time with Maria, the naturopath! Oopsie! Oh well. I was dressed by about 2pm, I think.

So, in terms of making it out, we're waiting for the platelets to hold their own, which will signify that the bone marrow is waking up. They told me at the beginning of this round that it takes longer to wake up because of how they hit it while it's down. The Dr today said you want the counts to be down because that means the treatment's worked. Not sure if the duration of the suppression indicates a better quality of treatment - I'd have thought dead leukaemia cells were dead leukaemia cells.

Anyway, here I was two weeks ago thinking that it was likely we'd be home by now, but it's nowhere on the horizon until those platelets wake up.

We had a few different visitors today which was good because the siblings and daddy weren't able to come, sporting a nasty cough.  Once again I found out about all the celebrities who'd been in during the week and hadn't made it anywhere near our room. We had Barbie come this week though, who could possibly top Barbie?

Monday 24th March

Well, we had 2 Geelong football players downstairs today - but I don't go for Geelong, so Barbie still wins.

Jacinta's weight was up by 300g and her sats at 95 or so, so they've decided to put her back on diuretics, but the Spironolactone - the potassium-sparing one. Hopefully this means breathing easily and keeping potassium until her counts come back up and we can turn off the antibiotics.

Have spent the last 3 hours finding out things for my husband who is flat chat and has no time to organise his trip to London this Friday. Lots of letting my fingers do the walking! Sore wrists and I still haven't found the best place to get a SIM card on foot without massive detours….Hmmm….

Tuesday 25th March - Thursday 27th March

I have to fess up: I can't remember anything that happened on Tuesday, except that the internet crashed! Accordingly, I couldn't blog at all on Tuesday.

Ah yes, I just checked facebook and saw that what should have been a straightforward exercise in hooking a sleeping Jacinta up for antibiotics at 7pm and then letting her sleep turned into a complicated exercise in hooking a rudely awoken Jacinta up for antibiotics at 7.45pm and people coming in and out for an hour and then it taking another hour or more for her to settle, which meant I missed rehearsal completely! It was nobody's fault really, but man it was annoying!

And now I remember, we were let off the leash! The nurse decided to unhook us between antibiotics doses (6 hours between) and then suggested we could go outside, to the park even!
So we did. I got some exercise, which was lovely, and could actually have stated with authority on the state of the weather for the day. Quite sunny and warm.

Wednesday was quite busy, my middlest came in as usual and we hung out. Miss J was a bit warm in the morning, tending to quite warm in the evening. We got downstairs again, to the playground, which was lovely. I asked the doctor in the morning if, since we could be unplugged between doses and if Jacinta's main problem was too much fluid, would it be reasonable to keep her unplugged all the time and only hook her up for drugs? The doctor had a chat to the nurses and they concluded that it would be reasonable, so we're now mostly free!

By the evening she needed haemoglobin and was not a very happy young lady. She wouldn't sleep on her own so when I eventually managed to extract myself, she was in the middle of my bed. I kind of arranged myself around her and slept there too.

Thursday was the day of the stuck lines. The thing with permanent intravenous lines is that you really don't want them to get blocked! You don't want to have to put in a new Hickman. That's surgery.
So there are three ways to "lock" the lines that drugs or blood flow through.
Strong lock is where you put a strong dose of anticoagulant (blood thinner) liquid in the tube, sitting there, making sure nothing in there clots, then you clamp it shut.
Weak lock is where you put a weaker dose of anticoagulant liquid in the tube. It doesn't last as long - a strong lock lasts a week whereas a weak lock lasts about 24 hours.
Saline lock is where you put saline in the tube. This lasts 6 hours.

So they were putting a weak lock in the tubes, then around lunch time Wednesday they said they were allowed to use a saline lock. Then they started 'occluding' repeatedly, which is where the infusion isn't flowing as well as it should.

Then this morning they were very hard to bleed back, which is where they check the line by drawing some blood back out of the tube to make sure it's in the right spot. They were getting a little stiff.
Then later this afternoon they could barely get anything back. They decided to replace the bits on the ends. They did this and they were still hard to get working.

I had to pop home and just before I did they got something called TPA (I think) which is what they give to stroke patients, similar thing to the strong lock, but heavy duty. They put this in the line. When I got back they told me it had worked and it was all bleeding back beautifully. (Yay!)

Now Miss J's sats (blood oxygen percentage) are sitting low and she's got a bit of wafting oxygen on.

The other exciting thing I heard when I got back is that the nurses had been having cuddles with Jacinta - who had woken up and not been screaming blue murder that I wasn't there!!! This has never happened. Not wanting to jump the gun, but perhaps we've turned a corner....

On the bloods front, the platelets seem to be trending upwards which signifies the bone marrow is waking up. Who knows how long it will be, but there's a little tiny light at the end of the tunnel.

And the family flies out tomorrow......

Friday 28th March - Sat 29th March

And away they flew.

And wasn't that interesting....

Jacinta's oxygen levels were a bit low still during the day so we had her on a bit of oxygen. She was feeling a bit warm too. The family came in about 11 and we hung out for a bit and then her grandparents came in to take over while I took the rest of the family to the airport to see them off.

She wasn't super enthusiastic about me going - she never really is.

When I got back she was sleeping on her Nan and before I entered the room I heard that she'd been dipping down during the afternoon and her temp had gone up over 38 - I was only gone three hours!
The doctors had been called in a couple of times and she was settled and on oxygen for now, but they were keeping a close eye on her.

Soon after I got back, she awoke and saw me and let me have it. I was told, in no uncertain terms, that things were not good! Then, about half an hour later, her temp was good and her sats were good. It was like the afternoon had never happened! She had been put on a second antibiotic though. Her sats that night were low and we needed some wafting oxygen - which is comical and slightly annoying that the monitor goes off every time she rolls over to get away from the mask.

I've now spent the last few evenings planning for the rest of the family's time in London, so I've been neglecting the blog.

The most interesting thing that happened on Saturday is that I asked the nurse looking after us to fill in the blood results from the last few weeks - I'm a bit behind. She did this and commented that we had some neutrophils. Sure enough, the very result from that day showed .22 - all of a sudden, just like that!

This is a going home number, so from then the game became to get her off the antibiotics and sort out the sats issues from fluid overload.

The night once again was low sats and oxygen. It was a broken sleep. I didn't get much.

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